Bias in the provision of medical services — whether research, treatment, diagnosis or otherwise — is a subject close to me. My mother died in November 2002 after failing to recognize that the flu-like symptoms she was experiencing were that of cardiac arrest. She didn’t recognize this because there has been precious little research into women’s heart disease and symptoms, and less awareness that not every heart attack is accompanied by the “classic” shooting pains in the left arm, which overwhelmingly occurs in men. Mom thought she had the flu and so didn’t seek treatment for three days, by which time her heart had been so badly damaged that there was nothing that could be done. We took her off life support the day before Thanksgiving. Happy fucking Holidays.
So when I saw this article referenced over at Salon’s Broadsheet, I knew I wanted to write about it. New studies have found that, even controlling for socioeconomic factors and disease stage, African-American women are more likely to die from breast cancer than white women, and minority women are half as likely to receive recommended treatment as white women.
In the first study, researchers reviewed data from 20 previous breast cancer studies that included information on patient survival, ethnicity, and socioeconomic status.
“Even after controlling for socioeconomic status and disease stage, African-American women were 19 percent more likely to die from breast cancer than white women,” study lead author Dr. Lisa A. Newman, director of the Breast Care Center at the University of Michigan, said in a prepared statement. “Our research underscores the need to investigate the role of biologic, genetic and sociocultural factors in breast cancer mortality among black women,” she added.
In the second study, researchers at the Mount Sinai School of Medicine reviewed the medical records of 677 women who had surgery for early-stage breast cancer in six New York City-area hospitals in 1999 and 2000.
They found that minority women were only 50 percent as likely as white women to receive adjuvant treatment, even though they had similar rates of referrals to oncologists.
The likelihood of under-use of adjuvant treatment was 34 percent among black women, 23 percent among Hispanic women and 16 percent among white women.
Unfortunately, there are no links to the studies themselves.
I know there are people who want to dismiss discrimination and bias, who think that it’s all overblown, that things aren’t really that bad, that things have swung too far the other way, blahblahblah. Some of them comment here.
But medical bias is where the rubber meets the road. People are dying because of deep-seated bias, bias that is probably unconscious but has concrete — and deadly — consequences. Any of those oncologists failing to prescribe post-surgical drug treatment to minority women at the same rates as white women probably doesn’t think of him/herself as racist. Yet there’s some reason, some unexamined assumptions, that leads that person to recommend a course of treatment more often for one group than for another.
Thoughts? Suggestions for where these kinds of biases might be rooted out — do we wait for medical school, or do we, say, insist on greater representation in medical textbooks and scientific experiments?
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I don’t know but my mother died of lung cancer after her doctors had been giving her antibiotics all winter for supposed respiratory infections. They never did a chest X-ray. The last day of her life she was feeling so awful my dad stayed home from work with her. He never did that before. She called her doctor and they said if she still felt bad on Friday to come in. That was a Wednesday. And she died that night.
There’s a lot wrong with medicine, there’s – I just try not to think about it too much, because I don’t want to think about how maybe my mom could still be alive. I just don’t want to think about that. So I don’t. Often. Much.
I’m sorry about your mom, too, zuzu. I should have said that.
It’s a huge structural problem, is part of why it’s so hard to fight. Given that the “default” for “generalized human” in this culture is white and male (among other things), this stuff is sort of a given — and while it would help to have greater representation of people who are not white and male in medical textbooks and whatnot, the problem is deeper rooted than that.
I also personally wish that every undergrad in the life sciences had to take a class on science’s interactions with society — both in terms of the effects on society of “pop science” and of the effects on science of widespread social bias. I come at my current sciency-ness from a decently strong background in sociology and gender studies, and I just cannot believe the assumptions that get made by students all the time — hell, even by some of the profs. They really think that their scientific reasoning is immune from bias. That’s how we keep getting really stupid studies on race and gender that have fundamental flaws not just in methodology but in the initial questions themselves.
That’s sort of peripheral, but I think that “we’re above social bias” thing is part of what feeds the lack of focus on the differential treatment that people receive, at least within the medical community.
Thanks, I’m sorry about yours, too.
Spit, interesting about your background informing your scientific studies. Medical education, from what I’ve been told, tends to do things in certain ways because that’s how they’ve always been done — such as 36-hour shifts during residency. It’s easy to see how that would stifle efforts to expose bias.
As a bit of an aside, the horrors of residency are, in my opinion, exactly what keeps many of the people who would make the best doctors from going to med school.
But the thing that gets me is, before they’re even in med school, they’re being given this biology education that never even talks about bias or the strange idea that maybe the way we design studies is based on our culture’s perception of what’s important.
And that sticks with them whether they become doctors — where this issue is a matter of life and death — or whether they become animal behaviorists who essentially interpret other animals through socialized human eyes and then all too often turn it back and use that work to say something about “natural” human behavior (props to those who don’t, but I’ve seen it happen, and it’s never pretty).
Dunno, maybe it’s just a major pet peeve of mine because I have to listen to it too often.
At any rate, I think as long as we act like white and male are the normal human condition, I think we’re going to have these problems in studies — personally, I get pissed everytime I see sections for “health” and “women’s health” in anything. And you and many others are already clearly far too aware that that has a direct impact on people’s lives.
I don’t know much about medical academics, but isn’t there a critical pressure point in the juried journals? If Jama always sees questions and comments about whether results are properly generalized to all demographics, won’t they react to that? If studies start simply saying, “we did not have enough African-American men in our sample to determine if the results are statistically significant for that demographic,” won’t it draw other authors to fill those holes as a way to get published?
Thomas — good point. It wouldn’t necessarily solve the problem, but it would at least force people to realize that their studies do not necessarily generalize outside of the specific demographic groups where they got a significant sample. Whether it would encourage the other specific studies well enough, though, I’m not sure. I’ll have to think about it.
Hi. Delurking to comment that, yes, the medical/biotech industry primarily focuses on whites and especially white men. However, I think there are efforts being made to address differences in disease risks in specific populations. For instance, I work in a genetic epidemiology laboratory which studies African American women to identify specific genetic markers that could indicate higher risk of breast cancer. Granted, this type of research is pioneering and not at all common, but I think (and hope) that it’s the beginning of a broader trend.
As for strategies to help this type of research along….The limiting factor for all biological research is grant money, which is doled out primarily by government institutions (NIH happens to be particularly parsimonious right now), which have quite a bit of leeway in choosing projects to fund. That said, they do tend to give money to research topics that focus on human health, so genetic epidemiology, although a small field, can rake in quite a bit of money. I think encouraging researchers to focus on genetic epidemiology and similar topics could help….although I’ve noticed that the majority of professors in my department are female, which could also be a factor. Moreover, recent advances in technology are allowing complicated genetic analyses that simply weren’t available before and in quantities that allow for statistical modeling. Suffice to say, there are a variety of reasons related to the current structure of biotech and biomedical research that prevent the type of research to which you’re referring..
Enough already. The problem is the still belief that white people are superior. White supremacy is alive and well and the doctor’s office is no exception. Study after study shows that black people are under treated for a variety of ailments. Having a brown face puts a patient at risk of being dismissed and disregarded. If black people are considered inferior then they don’t need chemo, or bypasses or any other procedure that can help them live. If we were treated equally there would be no need for white supremacy, and that would turn the nation on its head.
I would really love to see what the statistics look like if they are based on economics also. I know that being poor also limits your options to follow up on medical treatment or your desire to do so – it’s fine that you need certain treatment but it also (usually) puts you in lots of debt – debt that you cant afford.
Doctors who dont think they have racial bias also usually dont acknowledge economical bias when they two are very closely related.
And zenzicube is correct – reasearch depends on grant money and grant money is often tied to a cause.
Breast cancer has gazillions of dollars a year, as does prostate cancer and aids, yet basic biological studies which could effect ALL cancers go unfunded for two reasons:
1. Scientists have to become a lot smarter in framing their grant requests
2. Basic science is not sexy
#2 is the mantra of people like me, who have struggled for many years to get grants on important scientific studies and watched as the smarter researchers got funding for some ridiculous avenue of study because they framed it in terms of breast cancer.
Doctors not recommending the same treatment *could* be responding to their patients’ economic situations knowingly. If the patient has already shown fears of economic devastation, if a treatment is only somewhat likely to be beneficial, the doctor may decide the patient will suffer less emotional stress, which might be more harmful.
Another matter could be patient assertiveness. Most doctors rush patients, and do the “I know better than you” thing. Some people are going to be better at insisting on more options, more treatment, and fighting their insurance to make sure it’s covered, too.
They could also be responding to *perceived* socioeconomic situations and assuming that minority = poor.
Remember, the first study, the one that found black women died of breast cancer 19% more than white women, controlled for socioeconomic factors. I’d love to know if the study that found wide disparity in recommended treatment did the same.
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